Because a lot of women survive breast cancer more than the medical 5 years, I am expected to survive too. I haven't told anyone about my new found predicament except a freelance journalist friend. 

@arpie I've been involved in a couple of focus groups lately which have indicated that more focus is going to be given to the period after active treatment, to the survivorship issues. It made me feel a tad hopeful that things might improve.

@KezzaG The worry about recurrence or spread is ever present, ebbing and flowing, to a greater or lesser extent in all of us. I've done everything I could to reduce my risk. I've hardly any breast tissue left, but I have a genetic mutation. A new cancer could form, or I could have a recurrence in my armpit, scars or chest wall. There's half a chance I or the doctors could detect the first three, but because I had a double recon my chest wall is invisible. It would never be found until it spread. They won't even ultrasound my armpit annually, I just get a physical examination. I've perpetually got all sorts of aches, pains and sensations going on in there so I'm fretting about it daily. I am not overwhelmed by the worry, but it's a constant niggle. It's part of the bummer that is 'new normal'. It sucks to live with this hanging over our heads, but what to do?

My sister died, my mother survived. Which category am I going to fall into? All I can do is hope it's the latter. This is the uncertainty we all live with. The only thing I can say is you're not alone. We're with you lovely, hang in there. K xox

Yes! Happened to me re costs.. I was furious! Their job is to give us all options and if their facility can’t provide, to recommend someone who can! How we decide to pay or not pay us none of their business! 
We should not be denied best practice because of money! 
Shocking arrigance!

@KezzaG @EAA I get so fed up with being told to 'stay positive'. It makes zero difference and I think can lull you into a false sense of security. Which could lead to a much nastier emotional result if the f****r does come back, and possibly lead you to not spend your time wisely.

I would much rather we were told to "stay realistic". Give us ALL the information:  breast density, the fact that mammograms aren't perfect, especially with ILC, risk factors, and that 20 - 30% of ER+ early breast cancer will recur. There have been people here who've not been told about the genomic testing because their doctors have (erroneously) thought they couldn't afford it.

We're NOT babies! I'm a bloody grown-up. Treat me like one.

Just discovered there are 2 Lobularbreast cancer groups on Facebook 

I second @Sister comments re: long term hormone therapy being most important in our treatment. My Onc has said he strongly strongly advises 10 years for me if I can tolerate it. I met with a plastic surgeon last week to begin discussing recon and he said he’s heard of new research that’s indicating as many as 15-20 years of hormone therapy now. So who knows by the time we are nearing our 10 year mark we may be told nope sorry more to go! 

@KezzaG  It's pretty common for the end of treatment to inspire depression and anxiety.  My advice would be "get thee to a counsellor".  I fell apart pretty much at this time and I've heard the same from many people.  I saw a psychologist for a few months afterwards.  While you're going through active treatment, it feels like you have a plan and are doing something positive towards recovery, then all of a sudden you're in freefall.  I don't know your exact situation, but the general followup is reviews with the oncologist and surgeon on a regular basis.  For me, having finished chemo and rads last September, I have been seeing my onc about every 3 months and surgeon every 6.  At some stage my onc will cut me loose to 6 months and I will alternate between the two of them so that I see one every quarter.  Are you going on to some sort of hormone therapy?  I did ask my onc about recurrence and anxiety.  His comment was that I needed to try to manage the anxiety and live as though I was cancer-free because to do otherwise, was not living.  He didn't suggest that it would be easy.  I'm doing my best but I do find the side effects from the hormone therapy do hinder this significantly.  I'm also finding out that the hormone therapy may be more important for long-term survival than the chemo so I am determined to find a way to manage this.  There's no easy answer - we all hope to be on the side of the stats that is good but obviously some will be on the other side.  I think positivity can be over-rated - we can try for it but most of us fail.  I'll settle for management.  I don't have any evidence of cancer at the moment and until I find out otherwise, that's all that I'm working with.

As to info about ILC - you won't find a lot because there's not much there.  The American lobby site seems to be the best source of knowledge (at least that I've found).  But not surprising as it's a much larger population base.  I do remember my onc saying not to read too much into the predictor calculators because they're based on ductal and the results won't be valid for ILC.

@KezzaG  - there are so many on here that can totally relate to everything that you've been thru and some. 

So many of us were also diagnosed not long after having a 'clear' mammogram (given a false sense of security in a machine that was never going to detect ILC as they don't tell those of us with dense breast tissue that they really need an ultrasound!).... Pretty well none of us knew that having dense breast tissue was a hindrance in detecting BC either. 

Many had no family history of BC either - and most have had family & friends who don't just 'get it'.  They just don't understand the fear or recurrence & unrest in believing the treatment had WORKED, even after completing our 'active treatment'. 

It is like we are cocooned for months, from diagnosis, during surgery, chemo, rads & tabs - then BOOM!  You are on your own & supposed to 'get on with it'!!  

Put up any questions you may have here, and we'll all do our best at replying to the best of our knowledge ..... to help you thru the bumpy bits ..... cos we DO 'get it'. 

All the best for your remaining 2 Rads ...... A word of warning - I got strangely emotional on my last Rads appointment ..... they'd become part of my 'inner circle' for 4 weeks and I was a tad scared of 'leaving them' at the end!  Really weird - so take some extra tissues with you on your final day, just in case  xx

Take care xxx